Sara Karlin, 70, lives on a hill. In the past, when she’d go for a walk in her Portland neighborhood, she’d have to pause halfway up the hill to catch her breath.
That all changed seven years ago when Karlin underwent a septal myectomy surgery to remove excess scar tissue from the walls of her heart. The procedure to correct hypertrophic cardiomyopathy (HCM) has changed Karlin’s life.
“When I go for a long walk, one of my routes takes me up a steep hill, like you would see in San Francisco,” she says. “I no longer need to pause once, twice, three times. Now it’s a smooth pace up the hill; pause for a moment to enjoy my success and then walk on.”
HCM is a genetic heart condition that causes thickening of the heart muscle, leading to problems with heart function and potentially leading to heart failure. Karlin has felt the effects of the condition for most of her life. But now, the grandmother of four, for the first time, finds herself able to keep up with her peers.
“The best way to sum it up is that my adult children now say, ‘Mom, would you please slow down?’ when they walk with me. Prior to [surgery], it was always, ‘Let’s wait for Mom to catch up.’ ”
It Started With a Murmur
Karlin’s journey with HCM began with a heart murmur. Growing up in the 1960s as one of five siblings, she recalls three of them had heart murmurs, but hers was the loudest.
Despite seeing several doctors and cardiologists over the years, undergoing multiple heart procedures and an open heart surgery, Karlin did not receive an official HCM diagnosis until she met with a cardiologist at Oregon Health & Science University (OHSU) who specializes in uncommon cardiac diseases.
Over the next few years, Karlin’s treatment plan was carefully adjusted through medication, the implantation of a pacemaker and defibrillator, lifestyle changes and a research project that allowed her access to diagnostic tests. As her condition progressed, her doctors recommended a second open-heart surgery. Initially, Karlin was resistant to the idea and told her doctor so.
“His answer was, ‘That’s fine. In two years, you’re going to need a heart transplant,’ ” Karlin recalls. “So, of course, strangely enough, I went for the heart surgery.”
This time, instead of removing just one layer of tissue during the septal myectomy, Karlin’s surgeons performed a new procedure, removing tissue all the way down to the walls of her heart. Her cardiologist assured her the technique successfully resolved her issue and that she would not need any more surgeries in the future.
“The cardiologist came in after surgery and said to me, ‘Send me the picture of your first half marathon,’ ” she says. “I looked at him and said, ‘You just gutted me like a fish. What do you mean?’ And he said, ‘That’s what you’re going to be capable of.’ ”
Since then, Karlin has been able to participate in activities she never thought possible, like climbing steep hills without pausing. Although she still has yet to sign up for a half marathon, she’s not ruling it out and continues to test her limits and embrace her newfound freedom.
“The excitement is still going on [every time] I try something new and different,” she says. “I’ve had a lot of years of having to be just unconsciously cautious at all times.”
Finding Support Through Mended Hearts
Karlin has been a member of Mended Hearts On The Hill in Portland for about seven years. She first discovered the group through an announcement in the OHSU newsletter.
Since attending her first meeting, Mended Hearts has offered Karlin a space to learn from others and gain insights into her condition. It’s helped her learn to trust and listen to her body, accepting that fluctuations in her abilities are normal.
As treasurer for the group, Karlin has also found a sense of purpose and belonging. Together with the other members of Mended Hearts, she participates in events like the Heart Walk, creating a strong support network for those dealing with heart conditions.
“In any patient community, you have a tendency to feel very isolated,” she says. “[Before Mended Hearts], the only cardiac patients I saw were sitting and waiting for their appointments, but we didn’t communicate. … It has been the most wonderful community for me.”
Spreading Awareness and Hope
Karlin’s path to diagnosis was long and winding. Her journey highlights the evolving understanding of HCM as a genetic condition. She explains, “It has nothing to do with eating a ton of bacon fat or being sedentary; it just is genetically there.”
Once a gene is identified in a family, it is essential for other family members to get regular EKGs and consult with cardiologists if an irregular heartbeat is detected. In Karlin’s case, her siblings have not been officially diagnosed with HCM, but they have been advised to inform their primary care doctors about her condition. As the field of genetics continues to advance, more genes associated with HCM are being discovered.
Mended Hearts On The Hill has been instrumental in Karlin’s healing process, and she’s passionate about spreading the word to other heart patients. She and another member volunteer at OHSU to meet with cardiac patients, give them information and offer a tangible picture of hope.
“When we come in the room, looking all healthy and glowing, they see it as an optimistic view of where they can be in a year,” she says.
By raising awareness and offering a safe and supportive place for all heart patients to gather and learn, Karlin hopes to help others live and thrive with heart disease — and maybe even climb to the top of their own hills without stopping.
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